Maybe Not a Helmet?

Ben's helmet fitting was earlier today, and after seeing Ben, the orthotics place said they won't give him a helmet. The clinic said that typically, when a baby has the same head condition but undergoes the endoscopic methhod of surgery, they will immediately be fitted with a helmet. We had considered that type of surgery, but thought a worse surgery was worth not having to deal with the helmet. I now regret not making that decision before, because I believe we would have had better results.

The orthotics place said they had never heard of giving a helmet to a child with already fused plates, and three months out of surgery, and with the type of surgery Ben had. They said that without any CT scans, they cannot issue a helmet because they cannot determine if the plates have re-fused. So they refused providing a helmet- on the premise that giving him a helmet could cause major brain damage and restrict further head and brain growth all together. At the end of the appointment, they said they are going to bring our case before a national panel via conference call, and see if there are any other cases nationally, similar to ours.

From this point, I am becoming increasingly concerned about our options either causing Ben to need another surgery down the road, Ben forever having a severely misshapen head, or Ben having brain damage from a helmet that restricts brain growth. We will hopefully hear back from the orthotics place next week sometime, but they indicated we will probably hear that they will not provide a helmet in this case.

I emailed a pediatric neurosurgeon in Columbia, MO and he (Dr. Muzzafar) said it seems like Ben's procedure wasn't done well - not that we need a helmet. He actually said a helmet wouldn't do anything, and waiting won't help anything either. He said the only option is another surgery and it needs to happen as soon as possible.

So now I feel like I am at such a loss. I am considering going to Johns Hopkins or Mayo, because they are two of the highest rated pediatric neurosurgery teams. I feel like all over the midwest, everyone I have contacted has told us something different.

Springfield - wait and see
St. Louis - helmet
Kansas City - no response
Little Rock - no response
Dallas - surgery
Columbia - surgery

Still waiting to hear from another surgeon in Springfield, but I just feel like we need to get out of the area to go to one of the best hospital possible for our situation.

This is all so frustrating and I am really obsessing about researching hospitals, surgical teams, and research about our situation.

I know that overall, his head shape isn't terrible now. However, I fear that if it doesn't change much, or even gets worse, that he will look dramatically different from others by the time he is school-aged. I am prepared to handle that, but I hate to think we had a way to prevent any problems like that and we chose not to.